Monday the 11th – Tuesday the 12th of September 2017
This week started off with a day really jam packed full of visitors. Unfortunately I woke up to a cold not much better than it had been all weekend. The sore throat luckily wasn’t as bad, however I still had a bad case of the sniffles! I was told today was the start of the preparation for cycle two of chemo on Wednesday. Of course there’s always a build up to these things, they’re never quite as simple as chemo at such a time on Wednesday! Up today was, as they put it, a “top up” of red blood cells. A blood transfusion. It started at around 10 and was finished by roughly 12:30. It was grand, it’s somehow just becoming another one of these things that starts to feel normal. This was just when the visitors started to arrive. It was a busy day from here of chatting with people from home, between friends and family there was a lovely mix and it was an enjoyable day of catching up with everyone. I got to go out for dinner again today after all the visitors left, knowing it would be the last chance to get out for about a week again as tomorrow was when I would be hooked up again permanently to fluids and what not for quite a while. Myself and Dad headed out and we decided to try somewhere different for a change, it was a nice quiet restaurant, which at first can seem risky as its usually a better sign when a place is busy. But it turned out to be one of the most enjoyable evenings I had in ages. A nice quiet atmosphere is sometimes better than ever, and the food was amazing to make things better! It was just the definition of a cute relaxed evening. There was no rush on us and we even had some tea and enjoyed a chat after. Knowing things were to get serious again from tomorrow meant I thoroughly appreciated everything to the max! Ate everything especially slow and enjoyed everything that small bit more than usual. When I got back to the hospital, I spent the rest of the evening/ night writing my blog. I was wrecked from the busy day, but I enjoyed releasing all my feelings on the blog, as a sort of therapeutic part of my week.
Tuesday morning started with a relaxation class. I really enjoy these and feel I’m improving at it each time I go. I always leave feeling so relaxed. The girl who does the class is young enough herself and I feel really comfortable there. Only one other person comes to it along with me so it’s a nice small class, which I prefer as I feel I can talk far easier in small groups, I’ve always been that way! The more people in a room, the less I’ll talk. After the class was over, my Dad’s sister and my Godmother, Mary and her husband Tommy came up from Leitrim to visit me. We had a lovely day with them and I was wrecked by evening when they left. My cold was annoying me too so I had to have an evening snooze, and knowing things were to start for chemo soon meant I wanted all the energy I could get. I was started on fluids to prepare for the chemo at 6pm this evening. Back to having a constant drip. I wasn’t going to be unhooked again until the weekend some time. The doctors told me today that I should be let home for a week or so before cycle three over the weekend all going well! This was brilliant news, absolute music to my ears. This gave me even more courage before my chemo tomorrow, just knowing I’d get to see home sooner than I’d planned! Delighted. I spent the night getting used to being hooked up again and trying not to worry about tomorrow as best as I could. I finished my blog and felt I was ready to start my next phase in my journey. Number two out of six was underway to start tomorrow morning as soon as my kidneys showed signs of being ready for it. There was a whole issue of kidneys being the most important thing about this chemo, it has an affect on the kidneys so it had to be made sure that my urine was at above a certain pH at all times. And if it wasn’t, they had to give me something through my Picc to get it to that pH. Also, once the chemo started, they would have to make sure that the chemo was flushed out of my system as soon as possible as it can actually damage my kidneys. There was a bigger picture at all times! A lot more to it than meets the eye, unfortunately.
Wednesday the 13th – Friday the 15th of September 2017
And so cycle two of chemo was upon me. It’s not as simple as it just starting though. The pH of my urine had to be at 7 or above before they could give me the chemo. It was 12:30 before this happened. This time it was a different drug than before, called Methotrexate, a common enough drug from what I hear, which is also commonly used for arthritis. As I mentioned before, this was intense and toxic in its own way, and especially on the kidneys. For this reason it was very important that once it was inside me, the next step was to flush every ounce of it out of me after. Fluids were the main thing used to do this. It was also important that my pH stayed at 7 or above until my system was clear of the Methotrexate. The actual chemo took 4 hours to go in, so that part was finished by 4:30.
Initially, the effects of it were just tiredness. But by 5 o’clock, the nausea set in. It was the worst sickness I had felt in quite a while and it just would not go away. They gave me an anti sickness through my IV, but it didn’t work. So they tried another. This one finally worked, slowly, but made me feel dizzy. Nothing is simple! I eventually, by 8 o’clock, felt a good bit better. This was the start of what was to be completely honest, the most mentally straining week, of the chemo journey so far. It was also physically challenging but the combination of the two led to it being quite tough. The unsettled nights of waking up with the most horrible pain you can imagine in your tummy of pure fullness and needing to go to the toilet. Then to make those matters harder, each time I went to the toilet, due to being on the constant fluids and them needing to know if the chemo was flushing out of my kidneys, my output had to be measured. This was a bigger burden than I’d imagined it would be. Each drink I drank had to be wrote down and told to the nurses. There was just so much to this cycle that frustrated me. I had to do this with the last cycle for a couple of days too, but this would take longer, and the fluids were non stop.
Thursday was looking promising as they told me I might even get out on Saturday all going well! Once I heard home, it was just heaven. It was starting to feel like I’d never see it again. The day was a relaxing mixed day of feeling generally well, but sickness in the morning and again in the evening. There was an anti sickness that started to work for me so we knew to use that one when the nurse was getting me one, that made things easier thank god. The sickness was far worse after this one.
By Friday my leg started to swell and so did everywhere really. The exact same as before except even worse. My face, my whole body. My left side worse than my right. Again, the doctors put it down to my drainage in my left side not being up to the drainage of everywhere else in my body as thats where the tumour is. And the fact they were pumping in constant fluids meant that it wasn’t having enough of a chance to get rid of it. So I piled on the weight and started to look like a more chubby child version of Niamh than anything else! It’s hard to deal with because you start to not feel like yourself anymore. But I got on with it for now. Today actually seemed promising as we got told my chemo levels were well on they’re way down. They had to go to 0.1 and they were at 0.5. As far as we were concerned, and the nurses and doctors, this looked promising, and it was a case of them dropping to 0.1 over the weekend and me getting home, the question was which day!
Saturday the 16th and Sunday the 17th of September 2017
Today was probably what I should honestly describe as one of my worst days since all of this started in Dublin. My levels of my chemo couldn’t be done until the 24/48 ect. mark after the chemo was done, which meant at 12:30 each day. So regardless of that, we had no idea of when home would come. However, I thought it was reassuring that my consultant happened to be the doctor on call this weekend in my ward. This though, happened to not make one bit of a difference. When she came to see me, she said that because of the swelling from the fluids, she would be happier waiting till Monday or Tuesday for me to go home. The levels of the chemo in me also needed to be lower before they could stop giving me the fluids, so it was a horrible knock on effect of one thing causing another. This felt like the longest day ever as a result of hearing I wasn’t getting home over the weekend at all. It really was a horrible day. Even Mam and Dad felt it. I was for the first time in a long time, feeling emotional about things, and just generally frustrated about the whole thing. I hated how I felt and looked. I was just sick of not feeling like myself anymore. Looking and feeling completely swelled up is unbearably tough. Things like walking were even proving challenging because of it. I told my parents I needed some alone time that evening, as I really just needed time to myself to process how I was feeling and how I could improve my bad mood. I of course ended up getting upset when a nurse came in and she noticed there was something up with me. She was so helpful and stayed and talked to me for ages about how I was feeling. She brought me out for a walk and we just chatted about everything I needed to get off my chest and she completlely made me see it was normal for me to be feeling the way Im feeling and that I just had to let it out. Sometimes we all have this tendency to think its bad to have a cry or let out the mixed emotions in our heads. When actually, all that’s needed to help is to do just that. Let it out. Be it to someone you know or, like I did, to someone I don’t know quite that well, but enough to just talk to her and get an outsider’s perspective. I needed that to happen that evening. Or I would have felt twice as bad tomorrow without it.
Sunday I wasn’t feeling the best physically. I had a morning of sickness and headaches. Not so nice. I did improve as the day went on thankfully as I had quite a few visitors up to see me. It was the day of the All Ireland final so I had a few in to see me before and after the game. My brother and sister came up and my cousin too, we all watched the match in the hospital as I wasn’t allowed out due to being on the fluids, but we made it what we could and it turned out to be quite an enjoyable day in the end. My levels came back from my bloods and of course sickeningly, they went down as far as 0.11…. when they need to go to 0.10 for the fluids to stop. So, so close. Yet not close enough. So the swelling continued.
Tuesday the 19th – Friday the 22nd of September 2017
Tuesday was finally the day I got out of Dublin after a long month and a day stay. I felt every last day of that month as the time went on. I was never so happy to smell fresh air and get into the car and drive away from the Mater Hospital bound for Boyle! The thoughts of even seeing home again were something special. Just the smell of my house and the small things like that were what I looked forward to the most. They were the things I missed the most. Believe it or not though, even just seeing the town of Boyle was something I looked forward to. The town had done so much for me in the previous weeks and there was more to come, so I saw the place in a whole new light now. Each person I saw as we passed through the town when we got back, I looked at differently and appreciatively as more than likely, they had thought of me at some stage through all this or donated something towards my cause. Its unbelievable to think of how much people are helping me and my family to get through all of this. I really can’t thank people enough! I’ll be thanking people for the rest of my life at this rate. When I got home, to my house I mean, I was delighted to be greeted by my brother at the back door! I hadn’t seen David in so long so it was lovely to see him first thing. Then the lovely smell of home hit me and the fresh air smell of the country was also just perfect blowing in the back door. Everything about this moment was perfect.
I was then surprised by a lovely home made Welcome Home Niamh banner made by my little cousins. It was the cutest thing ever! We had invited the family over this evening earlier that day when I found out I was getting home. I thought it would be nice to see everyone all at once and have a big family gathering to celebrate being home. And so that’s what we did. It was so nice to see everyone again and I thoroughly enjoyed my night having everyone there and everyone happy. I was wrecked tired after it, but it was so very worth it! To have everyone together again and on a happy note, was amazing.
The next few days at home were spent relaxing mostly. I just enjoyed the home comforts which I had missed so much the past month. Being able to lye on the couch and watch Netflix series and what not, was just perfect. Doing normal things people my age do. As much as things aren’t normal anymore between all the tablets I have to take and injections and all that sort of thing, home is the most normal place to be in all of this. It is just heaven in comparison to hospital life.
Saturday the 22nd – Sunday the 23rd of September 2017
My days at home were coming to an end unfortunately. Knowing I was due to go back up to Dublin on Sunday meant that Saturday was my last full day at home. I was going to make the most of it! I went in to Boyle to a fundraising event that was being held for me in King House Tea Rooms, where I used to work. I really enjoyed it and seeing and talking to everyone who came to support me. It was nice to finally be able to attend a fundraiser and thank everyone personally myself. It felt so good to actually be able to do this. The article in The Irish Times which I featured in was out today so I had some breakfast in the Tea Rooms whilst reading the article about myself which felt nothing more than surreal to say the least. I never expected to be in a paper that big! Its a pity the circumstances under which I had to get in the Irish Times, but I suppose at least I can say its some sort of an achievement in itself. Myself and Oisin went for a walk in Lough Key Forest Part after the breakfast and it was just perfect also. Cold, but perfect. I had been imagining doing this when I was in Dublin, so to finally get my walk in the park, was brilliant! That evening, all my friends called to see me at home and it was great fun catching up with them all and having the chats about whats going on in their lives too now as I’ve missed out on all the gossip the last few months! It was great craic and I really enjoyed the night. It was so good because they could all actually make it. We were all together again for the first time in ages!
Sunday unfortunately creeped in and it was back to Dublin for us after a lovely home cooked dinner by Mam. We knew there was no bed for me in the hospital until the next morning, but to save travelling early in the morning as that would be a lot harder on me, we went up this evening and stayed in a hotel for the night. It would make things so much less stressful the next day too. So we went up to Dublin and stayed in the hotel for the night which was lovely and relaxing. Knowing things were to get serious again from tomorrow onwards meant that I made sure to enjoy every last bit of freedom while I still had it. The next chemo lined up, was the same as the first one I got. The first one which I don’t even rightly remember as I was so out of it. This made me quite nervous not knowing if it would effect me as badly this time or not as bad. The unknown was hard. As much as I did have it before! I just don’t remember it very well at all so it’s as if I never had it.
I’m writing this blog post far ahead of when all of this happened, as things have been hectic the last few weeks! So I apologise for the delay in any posts recently, but I have been quite sick and have had a few hiccups along the way. I hope to get weeks 13 and 14 done in the next week or so, and all will be clear then as to why I’m so behind with everything! But the reality of this horrible disease is that is so unpredictable. I think I’m going well with the blog and everything, but it has to take a back seat when I’m sick even though I would very much so love to be feeling up to doing it. I have to face it that I won’t be a lot of the time and it will have to wait and there will be a delay. I’m sure all of you lovely people reading this, completely understand this and wouldn’t even expect this explanation from me. But I just felt it was only fair to explain how hectic things have been for me these last few weeks rather than leaving ye wondering what has happened to my regular blog posts. I’ll do them when I’m up to it and unfortunately the treatment is hard and takes it out of me and leaves me wrecked and not with a whole pile of energy for doing this. Which is why I make a massive go at it any chance I am feeling good, and do my best to get as much of it done as possible. I really do love doing this and I have a big love for writing, especially since starting this journey. So I hope to keep this up and keep you all informed of my goings on after things happen. My journey isn’t a simple one, but remember, I can and will do this, with all I have in me, I’m convinced I am fighting this! And I’ve got all of you behind me, with me fighting this along the way.